... My life so far...
Where do I begin?? Ok, here is a summary of my life AC (after cancer)! As you know I was scheduled to go to MD Anderson on June 2nd to see a Dr. Heigimistercan'trememberhowtospellhisname. BUT, I really wanted to see Dr. M. Duvic. Not only because she's the leading specialist, world-renown, on the cutting edge, thinking out of the box, Mycosis Fungoides super woman, but also because I've heard she's real cool and groovy! So I called her office. They took my information. I called back... they said you already have an appt. w/an oncologist here at MDA. Besides you can't see her until June 27th. Keep your appt. w/the Dr. H guy and maybe he'll send you over to Dr. Duvic. Meanwhile in a Dermatology office in west Austin, Dr. Shaffer, my derm doctor is putting together a packet along w/pictures of Moi's arm, neck, face (I shudder to think what they look like) and getting ready to fax them to Dr. Duvic. His nurse calls Dr. Duvic's office. Her office declines the packet to be faxed, because, after all I ALREADY HAVE AN APPOINTMENT. But bless Dr. Shaffer's nurse she send them anyway. Dr. Duvic sends an e-mail to her schedulers (now how cool is that???) and says, make me an appt. with this Lisa Renee Atkinson person. Yesterday I get the call... they are babbling something about an e-mail and I can now see her and they need to make an appointment and ... they'll call me back. That's when I hit the wall. As many of you know I've been pretty, well how do we say it? Manic! So I crashed. Went to bed at 6:30 pm last night ... but feel much better today.So today I call and say Am I going to see Duvic??? When can I see Duvic???? Can it be sooner than 4 weeks???? And the answer to all these questions were Yes, Yes, and Yes. And I get to see her a day earlier than I was going to see the Dr. H. guy!!!! So a week from today, I'll be at MDA having who knows what done to my who knows what!Many of us all along felt like she was the one I was to see. So thanks for praying, thanks for keeping me in your prayers, they are the glue that is holding me together.You have all been AWESOME!!!! I love all of you guys who are reading this more than I can express. My family is blessed by you, I'm blessed by you!I'll try to write every 2-3 days and let you know what's up! What's down and what's sideways!
May 21, 2005
April 27, 2005
The Beginning... suspicions of Cancer (and some background)
Backgound: Diagnosed w/Psorasis in September 2003. Oral medication seemed to help. As my skin got better itching increased. Began light treatments in Nov. 2004. All that happened w/that was I got really dark. Strangers in the grocery store would jealously ask, "where did you get that tan??" We also began every test we could think of... all my blood tests came back normal. Who knew there was a special blood panel just for MF?? Then I noticed I was losing about 2lbs every 4 days. Now this was good news! But scary.
Had a biopsy by my Dermetologist in March. Results: little psorasisis and photo dermetitis. (When my derm had the pathologist recheck after my diagnosis, he changed the diagnosis but wrote [perhaps to cover his you-know-what??], These findings are consistent w/those of CTCL lymphoma. This case is somewhat unusual in that there is a rather significant componment of spongiosis which is uncommon for cutaneous T-cell lymphoma. That's me: uncommon
I noticed a large lymph node in my thigh. When I mentioned this to about the 100th doctor I had been seeing my primary finally said you need to go see this surgeon. I met with Dr. Marcus and he and I both agreed that it was only a symptom of me scratching so much. He wasn't worried at all and scheduled my surgery in two weeks. Which really surprised the scheduler. She kept saying are you sure? I was like, oh it's no big deal. After all my blood tests kept coming back normal.
Finally, had appt. w/Dan, my primary doctor, this morning. Assured me he's doing everything possible. Worried about cancer. Having CAT Scan tomorrow in stomach and pelvis. Said don't worry if they see any shadows may not mean anything. I have tinneatis (sp??) in BOTH ears. My left one was totally blocked all weekend and couldn't chew at all. Because of the ear infection I rescheduled the surgery to have my lymph node removed. Now it will be on May 10th. Yea, 4 days before my fifth birthday. Happy Birthday to me! But on to the cat scan.
The cat scan came back positive. On April 28th the cat scan report noted 5 large lymph nodes. The largest being 3.3 x 2 and the smallest 2.3 x 1.1. Also included in the report was the comment about multiple other smaller lymph nodes.
Impression: Lymphadenopathy within both inguinal regions. Pattern worrisome for lymphoma.
Had a biopsy by my Dermetologist in March. Results: little psorasisis and photo dermetitis. (When my derm had the pathologist recheck after my diagnosis, he changed the diagnosis but wrote [perhaps to cover his you-know-what??], These findings are consistent w/those of CTCL lymphoma. This case is somewhat unusual in that there is a rather significant componment of spongiosis which is uncommon for cutaneous T-cell lymphoma. That's me: uncommon
I noticed a large lymph node in my thigh. When I mentioned this to about the 100th doctor I had been seeing my primary finally said you need to go see this surgeon. I met with Dr. Marcus and he and I both agreed that it was only a symptom of me scratching so much. He wasn't worried at all and scheduled my surgery in two weeks. Which really surprised the scheduler. She kept saying are you sure? I was like, oh it's no big deal. After all my blood tests kept coming back normal.
Finally, had appt. w/Dan, my primary doctor, this morning. Assured me he's doing everything possible. Worried about cancer. Having CAT Scan tomorrow in stomach and pelvis. Said don't worry if they see any shadows may not mean anything. I have tinneatis (sp??) in BOTH ears. My left one was totally blocked all weekend and couldn't chew at all. Because of the ear infection I rescheduled the surgery to have my lymph node removed. Now it will be on May 10th. Yea, 4 days before my fifth birthday. Happy Birthday to me! But on to the cat scan.
The cat scan came back positive. On April 28th the cat scan report noted 5 large lymph nodes. The largest being 3.3 x 2 and the smallest 2.3 x 1.1. Also included in the report was the comment about multiple other smaller lymph nodes.
Impression: Lymphadenopathy within both inguinal regions. Pattern worrisome for lymphoma.
February 24, 2005
Did I ever really feel this way? A telling letter to my Primary Dr. And his nurse!
Looking back it's hard to believe I was ever this desperate. However, others tell me "Oh yea, Renee, you were that desperate".
Dear Dan and Bridgit,
I thought if I wrote you both, you would understand more fully what my phone call of Tuesday was all about.
If I sound frustrated, I am; terribly frustrated and I know it will be apparent in this letter. Bridgit when I was asking you to ask Dr. Rasor about tests, I was just throwing out some tests; like for leukemia or a body scan. I don't even know what a body scan is; the whole point for the tests is to discover if there IS SOME REASON WHY I KEEP ITCHING other than from psoriasis.
My itching is not getting ANY BETTER. In fact it seems the better my skin gets, the worse the itching. Here is my typical day. I have to take 1-2 Atarax (hydro whatever) every 3 hours or I feel like my skin is horribly sunburned. The Atarax only helps w/that feeling of being burned, and calms me down a little. I am NEVER ONE MOMENT FREE OF ITCHING. There is some place, some where, ALWAYS that is begging to be scratched. Then we have days like today where I pour on so much lotion I'm swimming in it and I'm so dry right at this moment I can barely type. Ok, that's an exaggeration but you get the idea.
Even though I take lots of drugs at night, my husband has had to get up every night this past week and sleep somewhere else because I'm tossing and turning. I find my self waking up in the middle of the night scratching. Though the sleeping pills are helping me somewhat, making me feel like I've slept a little, I wonder if I am getting any sleep??? I'm pretty irritable when I'm awake ;). BTW, Dan, those other sleeping pills you gave after Ambian, didn't work at all, so I'm back to using the Ambian (sp?)again.
So here are some things I'm thinking. What other avenues can we look at for my itching. My skin is looking great, the psoriasis is almost all gone. So why do I continue to itch? I understand there is some kind of saliva test you take or what about this (just found it on the internet): abnormally dry skin, sometimes called xerosis can cause itching. Can we test for that?
Here are some other things from this website: (http://health.discovery.com/encyclopedias/3074.html)
skin infections, such as scabies· body wide infections such as chicken pox· cancer or tumors, such as certain blood cancers known as lymphoma (oh if I had only known then what I know now!!!), multiplmylenomama, and polycythemia vera. Other tumors, such as a skin cancer called melanoma, stomach cancer or a carcinoid tumor, can also cause itching. Conditions with body-wide effects, such as chronic renal failure, certain liver conditions, such as cholestasis of pregnancy, or iron-deficiency anemia · autoimmune disorders, conditions in which a person's immune system attacks his or her own body. Examples include Sjogren's syndrome and multiple sclerosis. · hormone imbalances such as those that occur in diabetes. Low thyroid hormone levels called hypothyroidism and high thyroid hormone levels, known as hyperthyroidism, both can cause itching as well. psychological causes (well that made sense... I did feel like a nutcase!). These may include anxiety, psychosis or cocaine withdrawal.
Have we/can we checked my thyroid?
I'm just desperate. I'm about to go out of my mind, and I need to know that we are doing everything we can to seek out what is causing this.
Dr. Fox did mention we should give the light treatments at least a month. I'm willing to do that. But I'm very close to going for a month.
Also (I know I'm rambling) like today is just awful because it's cold and dry outside. However, this weekend when it was warmer or earlier this week when the heater wasn't going full blast, it was still bad, frankly that scared me because I've been thinking it's the cold dry air of winter and if only I can make it to the summer. But who knows?
So, I'd like you to consider other tests that rule out anything, ANYTHING, I don't care what it is. I just need to know that this itching is just my bane in life... a result of my psoriasis and not something else.
Make sense?
Thanks,
P.S. I didn't even mention the almost $2200 in office visits and meds since September 1, 2004 and all the time from work I've had to take.
Dear Dan and Bridgit,
I thought if I wrote you both, you would understand more fully what my phone call of Tuesday was all about.
If I sound frustrated, I am; terribly frustrated and I know it will be apparent in this letter. Bridgit when I was asking you to ask Dr. Rasor about tests, I was just throwing out some tests; like for leukemia or a body scan. I don't even know what a body scan is; the whole point for the tests is to discover if there IS SOME REASON WHY I KEEP ITCHING other than from psoriasis.
My itching is not getting ANY BETTER. In fact it seems the better my skin gets, the worse the itching. Here is my typical day. I have to take 1-2 Atarax (hydro whatever) every 3 hours or I feel like my skin is horribly sunburned. The Atarax only helps w/that feeling of being burned, and calms me down a little. I am NEVER ONE MOMENT FREE OF ITCHING. There is some place, some where, ALWAYS that is begging to be scratched. Then we have days like today where I pour on so much lotion I'm swimming in it and I'm so dry right at this moment I can barely type. Ok, that's an exaggeration but you get the idea.
Even though I take lots of drugs at night, my husband has had to get up every night this past week and sleep somewhere else because I'm tossing and turning. I find my self waking up in the middle of the night scratching. Though the sleeping pills are helping me somewhat, making me feel like I've slept a little, I wonder if I am getting any sleep??? I'm pretty irritable when I'm awake ;). BTW, Dan, those other sleeping pills you gave after Ambian, didn't work at all, so I'm back to using the Ambian (sp?)again.
So here are some things I'm thinking. What other avenues can we look at for my itching. My skin is looking great, the psoriasis is almost all gone. So why do I continue to itch? I understand there is some kind of saliva test you take or what about this (just found it on the internet): abnormally dry skin, sometimes called xerosis can cause itching. Can we test for that?
Here are some other things from this website: (http://health.discovery.com/encyclopedias/3074.html)
skin infections, such as scabies· body wide infections such as chicken pox· cancer or tumors, such as certain blood cancers known as lymphoma (oh if I had only known then what I know now!!!), multiplmylenomama, and polycythemia vera. Other tumors, such as a skin cancer called melanoma, stomach cancer or a carcinoid tumor, can also cause itching. Conditions with body-wide effects, such as chronic renal failure, certain liver conditions, such as cholestasis of pregnancy, or iron-deficiency anemia · autoimmune disorders, conditions in which a person's immune system attacks his or her own body. Examples include Sjogren's syndrome and multiple sclerosis. · hormone imbalances such as those that occur in diabetes. Low thyroid hormone levels called hypothyroidism and high thyroid hormone levels, known as hyperthyroidism, both can cause itching as well. psychological causes (well that made sense... I did feel like a nutcase!). These may include anxiety, psychosis or cocaine withdrawal.
Have we/can we checked my thyroid?
I'm just desperate. I'm about to go out of my mind, and I need to know that we are doing everything we can to seek out what is causing this.
Dr. Fox did mention we should give the light treatments at least a month. I'm willing to do that. But I'm very close to going for a month.
Also (I know I'm rambling) like today is just awful because it's cold and dry outside. However, this weekend when it was warmer or earlier this week when the heater wasn't going full blast, it was still bad, frankly that scared me because I've been thinking it's the cold dry air of winter and if only I can make it to the summer. But who knows?
So, I'd like you to consider other tests that rule out anything, ANYTHING, I don't care what it is. I just need to know that this itching is just my bane in life... a result of my psoriasis and not something else.
Make sense?
Thanks,
P.S. I didn't even mention the almost $2200 in office visits and meds since September 1, 2004 and all the time from work I've had to take.
February 06, 2005
The True Scratch that Satisfies
I spend my entire day looking for ways to scratch. You wouldn't believe the items I've found that can temporarily relieve my itching.
Brake pedals are great. While at a stop sign, place the souls of your feet on either corner of the pedal and scratch away.
Pill Bottles make good scratches. The bottom of them.
You know those foot rests found under desks? Turn it over and you have a variety of surfaces to scratch with.
Tongue Depressors work well and you can be discreet when scratching your back.
Credit cards, my ASH state badge, any plastic piece is great for scrapping off dead skin and relieves the itch... temporarily.
Our conference room at work has a great edge on one of the legs, but when I start rubbing my feet on it, it's a little, how do we say?, disconcerting to have all your co-workers turn and eye you.
Pens, letter openers, knives (the ones at fancy restaurants work best because they are heavier and longer), brushes, I've tried them all.
Does it do any good? Only when I'm scratching. As soon as I stop, then the itch comes back and sometimes, pain depending on what I grabbed!
It seems to me someone very wise once said:
But seek first his kingdom and his righteousness, and all these things will be given to you as well.
Or I like how The Message puts it...
33 Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met.
So, do you think maybe, just maybe, if I spent as much time seeking the Kingdom of God as I do seeking something to scratch with, my true itch would truly be satisfied?
Brake pedals are great. While at a stop sign, place the souls of your feet on either corner of the pedal and scratch away.
Pill Bottles make good scratches. The bottom of them.
You know those foot rests found under desks? Turn it over and you have a variety of surfaces to scratch with.
Tongue Depressors work well and you can be discreet when scratching your back.
Credit cards, my ASH state badge, any plastic piece is great for scrapping off dead skin and relieves the itch... temporarily.
Our conference room at work has a great edge on one of the legs, but when I start rubbing my feet on it, it's a little, how do we say?, disconcerting to have all your co-workers turn and eye you.
Pens, letter openers, knives (the ones at fancy restaurants work best because they are heavier and longer), brushes, I've tried them all.
Does it do any good? Only when I'm scratching. As soon as I stop, then the itch comes back and sometimes, pain depending on what I grabbed!
It seems to me someone very wise once said:
But seek first his kingdom and his righteousness, and all these things will be given to you as well.
Or I like how The Message puts it...
33 Steep your life in God-reality, God-initiative, God-provisions. Don't worry about missing out. You'll find all your everyday human concerns will be met.
So, do you think maybe, just maybe, if I spent as much time seeking the Kingdom of God as I do seeking something to scratch with, my true itch would truly be satisfied?
January 07, 2005
January 06, 2005
Pictures
Here are pictures of me getting my Photopheresis. Aww the life of Riley
A large needle extracts my blood a pint at a time for a total of 6 cycles. It drops my white blood cells into one of those bags then it goes thru the the sun tanning process:
The tanning bed is the picture with door open. See the lights. Just like a tanning bed. The white blood cells run thru there and get sunburned from anywhere from 29 minutes to 96 minutes. My average time was about 39 minutes of tanning!
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